I am tired of accommodations to fads and fashions, to power and privilege but that DISability access is too demanding, or we did that the last time, we can’t do that EVERY time.
I am tired of loving a world that doesn’t love me back.

I am tired of patience and desire.

I am tired of betrayal when an apology would be enough—mine or theirs.

I am tired of excuses and abuses.
I am tired of pity and scorn, and entitlement and hatred.

I am tired of the modern versions of the ugly laws and the look of disgust and contempt upon seeing me, by strangers who have no idea who I am.

I am tired of ableist jokes and insults
I am tired of abuse substituted for love, because there are good quiet crrpls and demanding shrews who need to be tamed.
I am tired of character assassinations when their arguments are no match for mine or because they will not be held accountable for their lack of real solidarity.
I am tired of infantilization and being treated like a child.

I am tired of excuses and favors because DISfolx aren’t seen as resources in our own experience.
I am tired of offense taken to be out argued or out spoken by a person like me, uppity, articulate crrpl that I am.

I am tired of having to ask for accommodations only to be treated with hostility for even posing the question.

I am tired of assumptions and accusations of people who know nothing but think they know everything, like why if I can walk up stairs one day, in one location, why I can’t another day in another location.

I am tired of entitlement of others to define for me the parameters of my reality.

I am tired of people deciding for me what I need, what I should be happy with, what I should like and how I should behave.

I am tired of people who never read a single book on DISability access, schooling me and ‘splaining to me how it’s going to work.

I am tired of people who seem to be allies, only to find out that they were keeping score all along, and anything they did to create access was weighed against my next request. I didn’t know you were keeping a running tab and that I was now in debt to you.
I am tired of pity and stares and stairs.
I am tired of “well no one else complained” or “there were other DISabled people there so it must be accessible.

I am tired of the assumption that if I’m the only one complaining that others must be comfortable when really it means that others may be silent because they don’t feel comfortable speaking up, and some people will harm themselves trying to fit in, and others won’t show up at all because they know the risk in asking.

I am tired of blaming the victim, of disparaging a complaint, of killing the messenger, of the cult of positivity, of silencing dissent.

I am tired of those who don’t need accommodations deciding without even a dialogue what access means.

I am tired of the expectation of gratitude for half a ramp, or one day’s effort or half measures in general.
I am tired of trying to fit into public spaces at all.

Rules for crrpls: do not ever ever ever ever ever imply that DISability rights is part of the larger struggle for universal human rights, against racism, sexism, gender justice and class power.

Rules for crrpls: Don’t impose yourself on real social justice movements, attempt to infuse DISability rights into discussions of marginalization, or insist, provide suggestions or even resources that would enhance DISability access in the larger human rights struggle.

Rules for crrpls: Keep your political activism limited to organizations that focus on DISability rights and issues of access that don’t interfere with real social justice work, even if and when those organizations exclude you either because they are run by nonDISfolx, white folx, people with social and economic capital or a professionalized staff not interested in grassroots organizing.

rules for crrpls: When people try to help you, always be grateful. Never contradict them or try to explain what you really need. This will hurt their feelings (enrage them). They’re really doing their best (trying to make themselves feel good at your expense), and it’s not like you deserve to actually have a say in your agency, body autonomy or full inclusion.

rules for crrpls: Do not get offended when people make fun of your health condition or physical or emotional characteristics. Certainly don’t interrupt their fun by pointing out the arrogance, bigotry and entitlement inherent in making fun of people’s afflictions and certainly DON’T turn the tables by making fun of them, when they give you that tired excuse “we’re just kidding, lighten up.” When they say, “anything goes” that doesn’t REALLY mean that you can make THEIR entitled asses the butt of your jokes.

Rules for crrpls: Don’t ever assert that Disability rights has any place in the larger struggle for social justice and human rights. these people are working hard enough for social justice to have to find time and resources to include your sorry ass.

Rules for crrpls: Appear grateful and upbeat at all times, and if you can, provide material for the inspiration of people without DISabilities.– You know: paint with your feet, walk on your hands, sing out of your ass– stuff like that. They love that shit.

Rules for crrpls: Never appear more capable than someone without a DISability. This embarrasses them and interferes with their entitled sense of superiority. There’s nothing worse than appearing less capable than someone already labeled incapacitated.

Rules for crrpls: Do not discuss your DISability in public. Discussion of DISability is the purview of those who do not have DISabilities, so they can appear magnanimous and generous.

rules for crrpls: Do not say “excuse me” if someone is blocking your way and is deep in conversation. Wait patiently until they are finished. Also, do not attempt to go around them, because they might bump into you and this would startle them.

Rules for crrpls: Don’t ask if an event that is open to the public or that you’ve been invited to, is ACTUALLY accessible. this is rude, as it puts the host on the spot and risks causing them embarrassment.

Rules for crrpls: Don’t show up to an event that isn’t accessible. This too may lead to the embarrassment of the host. You should magically know with your other hyper sensitive enhanced sensory abilities, if an event is accessible or not.

This is a constant work in progress with newer articles and finds posted to the top of the page.

One PWOD activist chastised me for using the term “inspiration porn” because it detracted from and minimized the damage and injury of “real porn” , but inspiration porn IS real porn. It is the depiction of a dehumanized and objectified person as other, for the gratification of the gaze of the viewer. It is everything porn is– exploitation, dehumanization, objectification, commercialization, abuse. We deserve to use that term an name our experience without the additional gaze of those who think liberation, revolution and justice doesn’t include us or can be carried out without us.

1. People need to have access to food that is good for them, their history, culture and biological needs.

2. Food needs to be raised, cultivated, slaughtered and marketed in ways that are safe, humane, and environmental for people and animals

3. Comparing animal livestock to slavery or other human systems of torture, genocide, concentration camps, etc. is offensive to those who have endured those systems and diminishes and desensitizes people to those systems.

4. Manure, a mainstay of organic farming is as much an animal product as meat, milk, eggs and leather. (The same goes for blood and bone meal which are also used as fertilizers). I don’t know how anyone can think she can step out of that reality. In an organic garden/farm, the carnivores are the good guys, because the herbivore “pests”– that’s what they’re called– eat the crops. Farming is cruel to plant eating insects, snails and other absconders.

5. Condemning eating dogs or horses while having no problem with killing cows, ducks, chickens, sheep and goats is cultural bigotry and self righteousness.

6. There’s a circle of life and for many species, either as carnivores or omnivores it includes eating meat.

7. There are some medicines that come from animal products and discussing the morality of eating meat without considering that, is outright ableist, and in trajectory, genocidal.

8. Industrialized society, specifically settler colonialist entities are disconnected from the trajectory of most of our actions. food is no exception.

9. I have raised and slaughtered my own food. i am aware of the process.

10. Whenever we save money on something it means a person is probably only making 2$ a day on that product. that outrages me.

11. People going about their lives as if other people weren’t in prison unjustly and inhumanely or being bombed by the empire, that outrages me.

12. The conditions that workers endure to put food on our table, that outrages me.

13. I really see no moral difference in outcome, all things relative, if someone knows where meat comes from and if they don’t. Dead is dead. Though I do think more awareness would bring about greater food justice to people and animals.

14. I have no idea how animal rights activists “check” themselves. it’s not like Bessie The Cow can say to you “Hey, I know your intentions are good, and you’re really up there with that human savior syndrome, but you don’t really represent my interests. You see, i’ve been historically selectively bred specific to a particular human need for thousands of years, and if they stopped breeding me, I would cease to exist, my species would cease to exist. so unless you’re expecting to have a herd of cattle as pets, or are demanding huge public spaces for us to roam freely, , which really defeats the environmentalist arguments, I really don’t see how all your efforts don’t simply result in extinction for me and my cow peeps.”

16. I support species rights– the rights of species to endure. I support environmental policies that protect people and animals.

17. The dismissing of the eating of meat as “simply cultural” is another example of cultural imperialism and racism. Let us instead support traditional food production, which is often much more consistent with humane treatment and environmental safety and stewardship. We must respect historic and traditional hunting grounds, animal domestication, agriculture, family and communal farms and permaculture.

18. Live and let live– I don’t see meat eaters going around demanding everyone eat meat, as part of an essential political mandate. (Though the bullying of vegans and vegetarians to eat meat, by meat eaters they know is also unacceptable behavior.)

19. Animal “rights” movements that don’t address the issues of DISability access to society, including to autonomous food choices and body autonomy and don’t denounce Peter Singer and PETA are not allies in any struggle for social justice. so just don’t even talk to me. you weren’t talking to me anyway. i wasn’t really human– or animal, for that matter.
The animal “rights” movement has a seriously problematic history of racism, sexism, classism and ableism, so anyone who is advocating for animal “rights”, needs to center these issues in their politic and severely separate themselves from the mainstream animal “rights” movement.

20. The “animal ownership is slavery, meat is murder” argument AND the environmentalist argument are incongruous with each other. Either meat is slavery and murder and after the dictatorship of the vegan proletariat, there will be wild herds of formerly selectively bred domesticated animals, maintained at human expense, having the same environmental impact they have now, except that they won’t become meat, OR the total extinction or partial extinction of entire species so as to not have that environmental impact. Either way, these domesticated animals will nave no autonomy from human decision making, and as such will continue to be subjected to human authority.

21. The insistence that one diet would work for everyone is cruel, supremacist, racist, ableist and patronizing. Whenever we assert that our lifestyle, diet, way of life, habits and morals are the only correct ones we are asserting arrogance and hegemony. Check that and check yourself!

22. The issue of environmentalism including veganism as individual choice is a distraction from capitalism in general. We can all recycle and compost and think that’s going to make a difference while corporations run amuck and unchecked. That’s where the attention needs to be, in real struggle against this hegemony that is destroying the earth, and not on appeals of guilt and the illusion that this is simply about personal choice for those who have the option of actual choice.

23. The racism, ableism, sexism and classism that is embedded in the animal “rights” movement prioritizes animals above entire groups of people, and that allows those with certain choices to assume a false moral high ground without actually challenging systemic oppression.
White savior syndrome, paternalism, self righteousness, unchecked provides outlets and platform for legitimizing white patriarchal ENabled ruling class hegemony; the antithesis of real social change, providing the illusion of social justice without actual justice.

24. Animal “rights” essentially is used to take away from or even perpetuate systemic oppression against marginalized people. In that regard, it will never really be about animal “rights” but will instead simply support abuses of people by means of a meaningless distraction.

25. For many activists who include veganism in the larger issue of social justice but continue to insist that meat is murder and slavery, maintain this position of moral supremacy over people they are in “solidarity” with. It’s one way entitled activists can maintain the moral high ground in the context of systemic oppression and inequalities in the movement.

(In numbering these points I am not suggesting a hierarchy of importance. I’m simply counting.) um meat, i love you let me count the ways.

Before you Criticize the Food Choices of Others http://meloukhia.net/2010/03/before_you_criticize_the_food_choices_of_others/“Food policing is an area in which all sorts of assumptions are made about class and ability status. It goes hand in hand with the idea that people have an obligation to be healthy, that all bodies are the same so there’s only one way to be healthy, and that there is virtue in eating “right” as dictated by current authorities in the food world. Like, say,MichaelPollan,whoiseditorializedfawningly in numerous publications all over the planet for his “simple” and “helpful” food rules.

Unspeakable Conversations (Should I have been killed at birth? The case for my life.)http://www.freerepublic.com/focus/news/843688/posts“He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like min…”

“The truth is there is no meal we can eat without killing. None. A trip to your local grocery store for tofu and spinach leaves may not include a single animal product but the harvesting of such food costs endless animal lives. Growing fields of soy beans for commercial clients means removing habitat from thousands of wild animals, killing them through deforestation and loss of their home. Songbirds and insects are killed by pesticides at legion. Fertilizers are made from petroleum now, and those fields of tofu seeds are literally being sprayed with oil we are fighting wars over. Deer died for that tofu. Songbirds died. Men and women in battle died. And then when the giant tofu factory harvested the beans they ran over those chemical oil fields of faux-food with combines that rip open groundhogs, mice, and rabbits. Tear apart frogs and fledgling birds. It is a messy and bloody business making tofu or any of that other non-murderous food.What about organic tofu and vegetables? That doesn’t include chemical fertilizers and the companies are mindful? Right? Well, that is correct. But if you are not using oil to fertilize your crops then you are using organic material: manure, blood, bone, fish, etc. You may be a vegetarian but your vegetables are the most voracious of all carnivores. That small farm at your local green market needed to lay down a lot of swine blood, cow bone, and horse poop freeze-dried in bags marked “ORGANIC” to grow those carrots so big and sweet. Animals are an integral part of growing food for us, as food themselves or creating the materials that feed the earth. And the earth must be fed.”

your ideas aren’t new to me. i don’t talk about my illness nor am i sick in order to get attention or because this is what i actually want. i have enough talented and intelligent, that if i weren’t this sick, could get a whole lot of attention doing a whole lot of things. as it is, i could get more attention pretending my illness didn’t impact my life the way it does. i could get a whole lot of attention pretending to be positive and happy, when i’m really not. i think there is a greater truth to be told, and a cost to that truth, but i also appreciate that my ability to articulate my experience is of benefit to those who also endure what i endure, but don’t have that capacity. —they tell me this! hearing from people who are validated by my words is priceless and makes my efforts valuable, to me, and apparently to others.

i think we live in a very compassionless society that blames people for their misfortunes and loves stories about people who “made it”. it’s a lot easier than actually taking care of each other. it’s easier than compassion, and it’s a politic that supports a brutal ruling class– that the rich got where they were, because they THINK better, that healthy, beautiful people are somehow more spiritual, superior.

it’s a politic that i embraced at one point in my life, and it rejected me. it doesn’t work. at a certain point all it does is create huge areas of denial –denial of pain, denial of people from the margins.

i do make healthy choices– eat healthy foods, do yoga, meditate, take vitamins, etc. i’ve tried many expensive modalities for treatment. i’ve thought good thoughts, etc. i’m sick. it’s just the way it is. (actually there are things i can do to get better, but some of them are too expensive right now. i simply don’t have the money.) thing is, when i get sick like this, speaking the truth about my condition, and resting resting resting is what helps. i’ve had this condition for 15 years. i know what it takes to manage it.

friends who want to help can offer to do so. they can ask my partner what they can do to ease his responsibility. they can give me rides to drs offices, bring over food, help out around the house, bring groceries, help raise funds for the care i can’t afford, support my work, or even, just visit. just sit and bear witness to what i real, what the present challenge is. — the things people used to do for each other, what they still do in compassionate communities.

life isn’t changed because we think good thoughts. nice idea, but it just doesn’t work that way. i’ve know a lot of people who were really silenced and marginalized with this thinking– people who have survived cancer, but not because they thought better than the people who didn’t. i lost friends to cancer who tried to be positive, ate all the right foods, did all the right things. i think it added to their stress, when what they really needed was to say exactly how frustrated, scared, alone they felt.

we tell people they create their own condition because it excuses a whole lot of injustice and marginalization, and because it makes us comfortable. it’s not easy listening to people in pain. it’s not easy listening to people who complain. it’s a lot easier to silence that in a spirituality of complicity and obedience. it’s certainly a lot easier than actually fixing this mess the world is in, and creating a society that meets human needs.

i also am not a fan of madonna. (the friend who this is to, used her as an example of positive actualization and insight). she’s a very mean and narcissistic person who has left a lot of bodies in her wake. the way she treats people who work for her, in her own words, is hardly positive, kind or healing. she’s no one i look up to. she has masterfully marketed her extreme talent into meaningless pop drivel and sexual objectification. as for her attachment to kaballah– it’s an ancient tradition, not a passing fad. it is very complex, not something that can be simplified for mass production. cultural appropriation is never attractive.

i haven’t come to these ideas casually, nor have your suggestions failed to make their mark on my life, nor have i rejected them capriciously.

i think greater healing though is had through telling the truth, no matter how inconvenient or uncomfortable. i know i am at odds with the culture around me, but nothing changes without complaints and non-conformity. i would rather find myself a small counterculture of resistance than find ways to please and appease an intolerant and compassionless society that blames people for their conditions, instead of insisting on ways to meet human necessity and asking people what they need.

i don’t want to have this conversation more than once, because i find it very hurtful and isolating. there is something more negative than the negativity sick or otherwise marginalized people are often accused of. it is the negativity of negating the full range of human experience and existence. it is the negativity of telling people what they have to say, who they are as they are, has no place in the larger society and is their own fault, if they only thought better or adopted some magic protocol.

there is a difference between curing an illness, and healing. healing is a much deeper process that requires deep truth telling, process and transformation. it is often quite wrenching, lonely and painful. (it is why so many cultures have initiation rituals that involve pain).

(at this point in time, there are no cures for my condition, though there are ways of managing it.)

i am not interested in maintaining the world the way it is, on either a small or large scale. i am interested in the deeper transformation, the deeper healing, and we won’t get there by insisting we need to think positively. we will only get there when we can clean up the muck that keeps us apart, that separates, that exploits and that poisons us. we certainly won’t get there by telling people in difficult circumstances, that their reality exists because they want to live that way.

(anyone who really knows me, knows i have a tenacity and a spirit that is hardly complacent or stagnant.)

my illness is caused by trauma and environmental toxins. without going into the details here (storytelling doesn’t mean some things aren’t private), the trauma i endured most people don’t survive. the trauma i endured is rooted deep in the power relationships of a brutal body politic, that i am determined to fight, on every level.

i tell the truth. i don’t just lie in this bed, sick, meditating, waiting, eating well, etc. i share my journey and i express my journey as a political one, among the larger issues of the day, imperialism, health care, education, oil spills, domestic violence, genocide, racism, sexism, ableism, heterosexism, etc. and i challenge those systems that allow these negative realities to go unchallenged under a cloud of enforced positivity and false blame.

i’ve seen this come up on facebook, several times and “liked” by several of my fb friends:

“When my sister was younger she came home from school one day and demanded I take her to the library so she could get books on sign language.I asked why? She told me there was a new kid at school who was deaf and she wanted to befriend him. Today I stood beside her at their wedding watching her sign “I DO””

a quick search shows that this STORY is posted on several pages, including a phishing page, and a feel good page full of the types of platitudes that do more harm than good for people with dis-abilities. (think positive. don’t complain, don’t raise REAL social issues, cause that’s just negative.)

so as a dis-ability rights activist, addressing real issues of access and human rights on a daily basis, i ask:

where is this school that has one student who is deaf?

how was this child taught sign as an integrated part of language development, if not in school?

where were the other kids who were deaf?

how did this child learn, if the teacher didn’t sign, and if the student didn’t receive instruction with other students who spoke his language?

how may women who are deaf “like” this post about a hearing woman marrying a man who is deaf?

can “deaf studies” be taught in arizona schools?

why does this story make hearing people feel good?

if this was a story about a white girl and a black boy, would the story be as “inspiring” or would it seem trite and insulting? (and how would black women feel about it?)

how many of the people who “like” this story, have friends who are deaf or are otherwise dis-abled?

how many of the people who “like” this story are outraged or even notice dis-ability discrimination, refuse to patronize restaurants, stores, educational institutions, non-profit organizations, health care facilities etc. that are not fully inclusive, demand sign language interpretation at all public events, demand classrooms with “special” education students fully integrated within the general population and with full funding and materials to insure real educational access, and an assertive anti-bully campaign to protect students with dis-abilities who are more likely to be the targets of bullies?

demand that parents with dis-abilities have full access to their children’s educational institution as easily as parents without dis-abilities?

do people who “like” this story find my questions offensive or over sensitive? are more comfortable with dis-ability defined by people not considered to be dis-abled (in this case, hearing people) than by people with dis-abilities?

how many have attempted to communicate or have had actual contact with people who are deaf?

what really matters to people with dis-abilities is: justice, access, inclusion, empowerment, self-definition. exceptional stories about isolated people with dis-abilities really don’t help us much and have much more to do with how people without dis-abilities feel about their relationship with people with dis-abilities, than with how we identify ourselves, what we need, or how we see the dominant society which my romanticize the company of one or two of us who “break free” from the imposed isolation, and in the context of deafness, from their larger community and identity, but does little to really engage people with dis-abilities or include people with non-conforming physical characteristics into the larger society.

i suppose if all the laid off workers, just think positive, everything will be okay. funny, oprah and the cult of positivity aren’t advocating for mass action or a national general strike– how positive would that be!!??

i envision a world where the workers own the means of production, where human need replaces corporate greed, where we live in balance and harmony with the earth, with health care, education, social justice.

thinking positive!

are we there yet?

i suppose if all the laid off workers, just think positive, everything will be okay. funny, oprah and the cult of positivity aren’t advocating for mass action or a national general strike– how positive would that be!!??
i envision a world where the workers own the means of production, where human need replaces corporate greed, where we live in balance and harmony with the earth, with health care, education, social justice.
thinking positive!
are we there yet?

The New York Times has a heart-breaking account of the fallout of a steel plant closure in Lackawanna, an immediate suburb of my hometown of Buffalo, NY. Within weeks of the announced plant closure, 3 workers suffered heart attacks, two of which were fatal.

The first to have a heart attack was George Kull Jr., 56, a millwright who worked for three decades at the steel mills in Lackawanna, N.Y. Three weeks after learning that his plant was closing, he suddenly collapsed at home.

Less than two hours later, he was pronounced dead.

A few weeks after that, a co-worker, Bob Smith, 42, a forklift operator with four young children, started having chest pains. He learned at the doctor’s office that he was having a heart attack. Surgeons inserted three stents, saving his life.

Less than a month later, Don Turner, 55, a crane operator who had started at the mills as a teenager, was found by his wife, Darlene, slumped on a love seat, stricken by a fatal heart attack.

It is impossible to say exactly why these men, all in relatively good health, had heart attacks within weeks of one another. But interviews with friends and relatives of Mr. Kull and Mr. Turner, and with Mr. Smith, suggest that the trauma of losing their jobs might have played a role.

It’s not just in Lackawanna. Multiple studies have found that layoffs not only lead to increased health complications, they can also significantly decrease life expectancy even for relatively young workers.

A growing body of research suggests that layoffs can have profound health consequences. One 2006 study by a group of epidemiologists at Yale found that layoffs more than doubled the risk of heart attack and stroke among older workers. Another paper, published last year by Kate W. Strully, a sociology professor at the State University of New York at Albany, found that a person who lost a job had an 83 percent greater chance of developing a stress-related health problem, like diabetes, arthritis or psychiatric issues.

In perhaps the most sobering finding, a study published last year found that layoffs can affect life expectancy. The paper, by Till von Wachter, a Columbia University economist, and Daniel G. Sullivan, director of research at the Federal Reserve Bank of Chicago, examined death records and earnings data in Pennsylvania during the recession of the early 1980s and concluded that death rates among high-seniority male workers jumped by 50 percent to 100 percent in the year after a job loss, depending on the worker’s age. Even 20 years later, deaths were 10 percent to 15 percent higher. That meant a worker who lost his job at age 40 had his life expectancy cut by a year to a year and half.

Interestingly, while some of the workers had a history of health problems (and believe me, Buffalo isn’t the healthiest city in the world, with a food culture of beef on weck, fried chicken wings, and delicious [union-made!] Labatt beer doesn’t help), none died until the layoffs hit.

Nevertheless, it was not until after company officials announced that the Lackawanna plant was closing that any of the workers actually died from a heart attack.

Buffalo is a city wracked by the loss of manufacturing jobs; what was once an “All America City” that hosted the World’s Fair in 1901 (at which President McKinley was assassinated..sorry about that, America – but hey, we named a mall after him!) and until key shipping port for steel and grains has declined to a city with meager manufacturing and a prevalence of health care and financial jobs. The major steel company at which these workers were employed originally closed in 1985, after a long period of layoffs and declining production.

What is certain though is that Buffalo is a microcosm for the decline of manufacturing jobs, real American production, and the squeezing of America’s middle class. That workers internalize this stress shouldn’t be a surprise; it’s simply a sad testament to the new economy. Until there’s real investments made in jobs and in rebuilding the middle class, this decline of jobs, manufacturing, the middle class, and workers’ health will continue unabated.